Princess Eden Adams

From one of Eden's Classmates

2011-01-31T17:25:00.000-05:00

I recieved this email today, After I drying my eyes, I'm posting this to share with everyone. Thank you Ana

I would like to tell you about your daughter. Eden was amazing she was in my third grade class. Oh and I'm Ana btw. Anyways... I sat next to her at lunch and she made my day. Then I asked her if she would play with me at recess I forget what happend next but I do remember her reach and holding my hand. It made me so happy that she was happy, my heart felt so warm and fuzzy I almost cried. Please post this on your blog. I feel that people should know the influence she has on other kids

-Ana
5th grade

Merry Christmas 2010

2010-12-22T20:22:00.003-05:00

I miss Eden!
Please help me decorate her 2010 Christmas Tree!
Click on Eden's 2010 Christmas Tree
Thank you!
Rourke

Happy Birthday Eden

2010-04-20T21:57:00.005-04:00

We are planning Eden's birthday!

We will have cake and ice cream then visit her garden at the school.

Happy Birthday Eden,

I love you and miss you each and everyday!

Love,

Daddy

Eden's NEW Blog

2008-01-14T14:32:00.000-05:00

Please bookmark this as Eden's new Blog.

http://edenadams.org/blog/

Merry Christmas

2007-12-27T21:58:00.000-05:00

2007-12-21T10:39:00.000-05:00

Quick Pictures

2007-12-06T21:32:00.000-05:00

Eden looked great today. Just wanted to share a quick picture. Were putting together a plan based on the results this week. Also, Eden got to play with a new fan from the Columbus Blue Jackets. #38 Joakim Lindstrom.
I'll update everyone soon!

Topotecan/Cyclophosphamide

2007-12-02T23:00:00.000-05:00

Topotecan / Cyclophosphamide are the chemo’s Eden will be starting tomorrrow. They will be running at a 100%. She had her bone marrow biopsy on Monday and seems to be doing well considering. Here’s a copy of the scan that you can look at and the chemo will be done over the next five days. Next Monday she will get a stem cell rescue.

Picture from today's scan

2007-11-28T17:07:00.000-05:00

We don't have details as of yet. But, I will update you as soon as we discuss the scan with Eden's Dr's.

Eden's Visit with Santa

2007-11-25T17:15:00.000-05:00

Eden's current schedule

2007-11-24T00:01:00.000-05:00

I hope everyone had a Happy Thanksgiving.

Tuesday the 27th Eden will be going to clinic as normal and then will get her injection at 2:30pm to prepare her for her MIBG scan on Wednesday the 28th at 11:30am with no sedation. So, fingers crossed and hope that Eden's result are stable.

Columbus Blue Jackets

2007-11-20T14:52:00.000-05:00

Eden had some of here friends show up today while getting transfused: #25 Jason Chimera, #27 Manny Malhotra, #45 Jody Shelley, #9 David Vyborny, and #2 Kris Russell

Eden's counts

2007-11-19T21:44:00.000-05:00

Hello everyone,
Well it's been awhile and I'm sorry. Eden counts have been extremely low and we’ve been busy tending to her. She has missed a lot of school and was trying to maintain as much normal as possible. Her platelets have been hit hard with the MIBG and I've convinced everyone to try Neumega which is a platelet builder. She is into week two and we'll keep our fingers crossed. I'll update you soon with additional information but overall Eden is hanging tough!

Low-Dose MIBG Therapy

2007-11-02T11:00:00.000-04:00

Eden had her low-dose MIBG therapy yesterday uneventfully and her Post-treatment scan shows the same two spots in the left leg, with no evidence of new disease. We very pleased with this and will keep our fingers crossed that we can continue to treat Eden with this therapy. Eden will be treated in 5 weeks instead of 6 in Philadelphia. We will have to see what happens to her platelets in the next few weeks. The new transfusion number is 20000; if Eden is not below 20, she will not be transfused. This is so that we can closely monitor how her body is handling the MIGB Therapy.

Philly on the 1st

2007-10-22T17:41:00.000-04:00

The Princess will be heading to Philly on the 31st to party it up at the Ronald McDonald House on Halloween. Her treatment will on the 1st for another low dose of MIBG therapy. Just for clarification the spot on her chest is her port. I’ve got a couple of email and phone calls on that one. I’m sorry for not pointing it out.

MIBG Scan

2007-10-17T19:37:00.001-04:00

Here is the previous scan and today’s scan. Things are really no better and no worse. So, for the time being we'll take this as a positive. Eden is scheduled for a trip to Philly on November 1 for another Low Dose of MIBG therapy. Stable results are ok. Can you tell I'm convincing myself of that? She is going to school as much as possible and getting tutored almost every Monday and Wednesday. I’ll post more as I get additional information.

Clinic Visit

2007-10-09T17:51:00.000-04:00

Today at clinic was uneventful, Just a long day! HGB: 7.0 WBC: 3.2 and Platelets were 48,000. A red blood transfusion was in order. I convinced Eden to enjoy a nap after coloring. She had colored a Rocket picture with and outer space type of theme for her Nurse Lindsay today. She recieved 100ml's over a few hours. Getting ramped up for next weeks MIBG scan and has to be in clinic this Friday as well for .

Hanging in there!

2007-10-04T20:02:00.000-04:00

Eden has been up and down this week and last weekend. Overall She's being typical Eden. Next Tuesday we'll go to back to clinic to check her counts and continue to get her ready for the next trip to Philly. Oct. 17th will be a major milestone for her. It will determine weather she returns to Philly or if I have to pull out a trip to Vermont or LA. I'll get a new picture or to up soon.

Eden Philly Update

2007-09-21T16:25:00.000-04:00

Eden's home from Philly. She seems to be handling things pretty good at this point. She will rescan in 4 weeks. If the results are positive or the same she will continue to travel back and forth to Philly for the low dose MIBG. This treatment can be repeated ever six weeks. So, in theory she could be in Philly on Halloween. We just need to stay positive. Eden is very high maintenance right now. Her counts are still recovering and we hope that this doesn't hit her to hard. Her bone marrow was clear from lasts weeks testing and the only spots she seems to have are the pelvic and thigh. Thanks for checking and We'll be talking to Dr. Nick and Dr. Mosse soon and hope to have additional information.

Not so good news

2007-09-14T13:22:00.001-04:00

First of all, I wanted to apologize to everyone for not keeping up with the updates. We have been very busy at the hospital the last 3 to 4 weeks. Wednesday we got confirmation that the current study is not being as aggressive as we had hoped so Eden has officially relapsed. She has new growth in her left leg. This is not a new area for her; it has shown up on previous scans when her contamination level has been high. The plan is to run to Philadelphia for a low dose MIBG therapy treatment. This treatment has been very successful for Eden. Now the problem with repeating this treatment will be that she will build up a resistance to repeated drugs. But, I’m hoping that this will work to bring her back into a good standing. The last few weeks Eden has been though many transfusions, scans and the surgical bone marrow aspiration as of yesterday. In the midst of all this she still has managed to make a few days of school and continued home tutoring. Her spirits have been good, except during the evenings and late at night she has had sever pain that were dealing with. During those times she has just been very uncomfortable. But for the rest of the time she’s typical Eden. As far as the Kieran_5 drug antiangio study she has completed 6 full weeks of treatment and is off the medication as of yesterday. The plan is to put her back on it after we verify counts returning from the MIBG Therapy so we might just have a two week break from those medications.

Clinic

2007-09-04T19:42:00.001-04:00

Eden had a long day at clinic. Mama Hope spent the day with Eden doing counts and Red Blood. Eden did get lucky and got to spend the day with her friend Hannah. That always makes her day better to buddy up with someone. All in all her counts are taking a big hit and after the MIGB scan next week we my have to discuss additional or different treatment options. Thank you to Hannah's mom for allowing the two of them to play together.

1st Week of school pics

2007-09-03T22:22:00.001-04:00

Eden had a pretty good week at school. She still had two days at clinic for transfusions but overall things went well.

Dr. Hunny R. Adams ~ Congratulations

2007-08-26T22:50:00.000-04:00

I just wanted to congratulate my sister for completing her Doctorate of Physical Therapy; she graduated today from The Ohio State University.

Kieran 5 Drug Antiangio Trial Update

2007-08-21T18:39:00.000-04:00

Eden is into week three of 28 taking her chemo from home. We had to give her a boost of Stem Cells right off the bat. So, we stopped the Etoposide for now to let her counts recover this was having an impact on her platelets. Eden is still getting Platelet transfusions at clinic but hope that her stem cells start to pick up and hope that the transfusions taper off. The Thalidomide was a bit difficult to get but now that she's on it other than making her tired she's going great. She's to take the Thalidomide right before bed, because when she does, it put's her down. Next week is the start of the new school year on Monday. She will be a big 2nd grader, new building, new staff and new teachers. I hope that you enjoy some of the picture that I put up these are friends and adventures that the kids have got into.

Picture Update

2007-08-21T18:31:00.000-04:00

Congresswoman Deborah Pryce

Picture Update

2007-08-21T18:26:00.001-04:00

Picture Update

2007-08-21T16:39:00.000-04:00

Some of Eden and Friends

Have a box of tissues ready!

2007-08-12T12:30:00.000-04:00

The YouTube Video has been relocated to the right index!
Also, this years Hemecamp pictures all 1000 of them!

Off to Camp

2007-08-05T09:35:00.000-04:00

Here are picture of Eden and her friend Elizabeth heading off to camp. I'm sure that Eden will have lots to share this afternoon when she returns home.

Doing Well

2007-08-01T17:36:00.000-04:00

Eden is doing well and planning for her big day on Friday.. She will be leaving for Hemoc Camp and she cant wait! This will be her third year going and i don't even know how to explain my feelings on that. Of course i wish we didn't know the meaning of Hemoc but on the other hand i am so very grateful that she was able to make it one year much less 3! We feel very blessed every day we have this amazing little princess. Dad took her to clinic on Tuesday and her counts were fine and really seem to be stabilizing which is wonderful news. I doubt she will need any more platelet transfusion but she may need to continue getting blood once or twice a month. Who knows we will just play it by ear. We do now have the Rx for her new drugs however one will take a little time to get as it requires Dr. Yeager to get Certified to prescribe it and the pharmacist must be certified to fill it.. Amazing considering i believe this is one of the anti-inflammatory. I believe the issue involves the very serious birth defects if taken or even handled by a pregnant women.

Just a heads up to keep Aug 17Th open for a very special event. The first annual Project Runway.... Eden will be modeling for this event and all proceeds benefit Children's hospital Oncology Center. It will be held at the Grand Host East (8660 East Broad Street in Reynolds burg) Show times will be 6 p.m. and 7 p.m. and tickets will be $5.00 per person. I will update tomorrow with the website where you can go buy your tickets.

Something i ran across today and wanted to share......

A MOUSE TRAP STORY.. (This is excellent.......) A mouse looked through the crack in the wall to see the farmer and his wife open a package. What food might this contain?" The mouse wondered - - - he was devastated to discover it was a mousetrap. Retreating to the farmyard, the mouse proclaimed the warning : There is a mousetrap in the house! There is a mousetrap in the house!" The chicken clucked and scratched, raised her head and said, "Mr.Mouse, I can tell this is a grave concern to you, but it is of no conseque nce to me. I cannot be bothered by it." The mouse turned to the pig and told him, "There is a mousetrap in the house! There is a mousetrap in the house!" The pig sympathized, but said, I am so very sorry, Mr.Mouse, but there is nothing I can do about it but pray. Be assured you are in my prayers." The mouse turned to the cow and said "There is a mousetrap in the house! T here is a mousetrap in the house!" The cow said, "Wow, Mr. Mouse.I'm sorry for you, but it's no skin off my nose." So, the mouse returned to the house, head down and dejected, to face the farmer's mousetrap . . alone. That very night a sound was heard throughout the house -- like the sound of a mousetrap catching its prey. The farmer's wife rushed to see what was ca ught. In the darkness, she did not see it was a venomous snake whose tail the trap had caught. The snake bit the farmer's wife. The farmer rushed her to the hospital , and she returned home with a fever. Everyone knows you treat a fever with fresh chicken soup, so the farmer took his hatchet to the farmyard for the soup's main ingredie nt. But his wife's sickness continued, so friends and neighbors came to sit with her around the clock. To feed them, the farmer butchered the pig. The farmer's wife did not get well; she died. So many people came for her funeral, the farmer had the cow slaughtered to provide enough meat for all of them. The mouse looked upon it all from his crack in the wall with great sadness. So, the next time you hear someone is facing a problem and think it doesn't concern you, remember ---- when one of us is threatened, we are all at risk. We are all involved in this journey called life. We must keep an eye out for one another and make an extra effort to encourage one another.

Blogathon Schedule

2007-07-27T17:27:00.000-04:00

It is that time again.. one of our favorite Blogger's is set to start her 24 hour blogathon in the morning. Sorry for the late notice. Please go to her site and give if you can. All money goes towards the Neuroblastoma foundation. Eden will be featured at 11am sat morning. Nikki we love you for all of your support and cant wait to hear how things go!

http://www.bloggingforkids.shebecameabutterfly.net/

Anti-angiogenic Chemotherapy

2007-07-26T20:48:00.000-04:00

Anti-angiogenic Chemotherapy: A Phase II Trial of the Oral 5-Drug Regimen(Thalidomide, Celecoxib, Fenofibrate, Etoposide and Cyclophosphamide) in Patients with Relapsed or Progressive Cancer

Abstract

Drugs that attack the process of neovascularization, including endothelial cell proliferation, migration and/or tube formation, have anti-angiogenic activity. Chemotherapy, which possesses significant anti-proliferative activity can thus be used to target tumor vasculature as well as the tumor cells themselves. By altering the dose and schedule of a number of chemotherapeutic agents, this activity can be optimized to inhibit neovascularization, required for tumor growth and progression, while minimizing toxicity. A combination of 5 oral agents will be used in a ‘low-dose’ anti-angiogenic schedule designed to target the tumor vasculature. The drugs will include continuous oral administration of thalidomide, fenofibrate and celecoxib with alternating 21-day courses of oral etoposide and oral cyclophosphamide. Patients with poor prognosis disease will be eligible for this protocol. Treatment will be initiated for 27 weeks duration and may be extended depending on tolerability and response. This study will assess the feasibility of this treatment regimen, as well as gather data on the efficacy and toxicity of this approach. A number of biologic parameters will be examined to assess response.

This is the trial that Eden will be starting next week. Just wanted to let everyone know what had been decided on!

Medical Update

2007-07-21T15:56:00.000-04:00

After our discussions with Dr Yeager (Columbus), Dr Mosse (Philadelphia), Dr Reynolds (Los Angeles), Dr Russell (Houston), and Dr Sholler (Vermont) along with many others. Here is the current list of options that Eden has available to her.

#1 Boston Trial: Anti-angiogenic Chemotherapy: A Phase II Trial of the Oral 5-Drug Regimen (Thalidomide, Celecoxib, Fenofibrate, Etoposide and Cyclophosphamide) in Patients with Relapsed or Progressive Cancer.
#2 Kettering 3F8's consult with Dr Kushner
#3 Fenretinide in for compassionate use.
#4 Humanized Antibodies
#5 Zoledronic acid and low dose Cyclophosphamide-both are commercially available.
#6 CEP-701
#7 Low Dose MIBG Therapy
#8 Other Antiangiogenic agents
#9 AZD 2171 – New just opened in Philly

Overall directive,
Starve the cancer cells and protect her marrow. Platelets must be 75000 to start any of the trials.

Must redo her bone marrow 3 wks prior to starting any treatment, after starting any treatment we will rescan in a month from the start date.

We have been very busy trying to determine what is the next possible step for Eden and Dr. Mosse is going to email additional information for us to review to help use make the next best decision. This quick list of options is derived from hundreds of phone conversations, conferences and emails. As we get more details and a narrower scope I’ll be sure to get the information on-line for you all to see.

Thank you for all the phone calls, emails and congratulations in regards to Eden, I’m sorry if I haven’t have time to respond. But, as you can see we really have been a bit busy.

Feeling Good

2007-07-18T12:15:00.000-04:00

Eden has been feeling great. Everyday she finds something wonderfully fun to get herself into. Monday she went to the Big Splash with Ally and Lil. (waterpark near our home) and Tuesday CeCe took her to Clinic and then her very good friend Nancy took her to lunch at Easton and then shopping at Nordstroms. Today she is with Mamu Hope having a picnic at the park and playing. Every night this week Eden has Vac Bible School and her Cousin Mic has been going with her. She LOVES it and cant wait each day to go back. We had a brief email exchange with Dr. Mosse in Philly regarding treatment options and they are doing their best working as a team to come up with the best plan. The picture posted is from the Yard Sale about a month ago that Sweet Kelly took of her and sent to me. The puppy is Maggie who lives behind our house. We just had new people move into a house that connects to our back yard fence and they have 4 little Yorkie's that Eden promptly fell in love with. She amazes me everyday. Her counts were good and she needed no transfusions on Tuesday. She will head back to clinic on Friday

NED

2007-07-14T19:19:00.000-04:00

Rourke spoke to Dr. Yeager this morning and Eden is officially N.E.D!!!!! I cant tell you what a wonderful blessing this is to us! The last few months have been very calm because the MiBG treatment was done and there was nothing for us to do but wait and we felt comfortable that the treatment would do its job as it did the last time so this last week was extremely stressful going back into the pits of Nuc Med for scans and once again watching the image of her little body show up on the screen and holding my breath looking for spots to light up.. People always ask how do we do this day in and day out and some days i can honestly say I DON'T KNOW and then one smile from her or hearing that amazing little giggle and the world is right again and i know there is nothing in this world i wouldn't do to know i can see that smile again tomorrow. I think and pray every day for so many parents who no longer have that and i know how lucky we truly are.

Many people have emailed in the past few days confused as to our "concern" about clean scans.. Please understand there is nothing in this would more important then clean scans to us but even though we cant see the Cancer Cells in there they are for sure still there. No doubts in anyone mind and it will come back. It is imperative that we get her back on a treatment plan ASAP to try and keep the Cancer quite for as long as possible while her body heals and the Dr.s continue to look for a Cure. Doing nothing is not an option. The problem with finding a study for her is there aren't any open at this time for a child who is NED. We will probably ask to put her on one based on Compassionate use. This status is used to allow children into studies they would otherwise not qualify for. They have very strict guidelines for studies for a very good reason.. If they were to allow children who are NED onto a study it could upset the results of the study if favor of the drug just as if they allowed children with extreme amounts of cancer it could upset the results the other way.. When a child is allowed on a drug on a compassionate basis the results will not be included into the study. Dr. Yeager is working with Dr. Mosse in Philly as well as Dr. Reynolds in CA and next week we will be meeting with them to discuss what is next.

Thank you for all of your prayers! We couldn't do this without you.

Scans

2007-07-13T17:44:00.000-04:00

Pictures provided by Flashes of Hope. While in Philly.

Eden had her MiBG Scan on Wed Morning and i spoke with Dr. Yeager yesterday afternoon. Her Scan is completely clean!!!! Thank you all who have been praying for her! This is proof that it makes a difference. The MiBG Scan is the best and biggest detector as to what is going on in her body so we feel very comfortable that the rest of her tests will be OK. She had her Bone Marrow done on Thursday Morning and we should get the results from that on Monday however it would be unlikely to see anything there because it has been Neg for almost a year now. She had her CT Scan today and again it would be very unlikely to see anything here when the other scan was clear. They will however be looking at her abdomen area to decide if they need to remove her Gallbladder while she has good counts. If that is what needs to be done then that is what needs to be done. We are just very thankful that it didn't become necessary while her counts were in the tank.

Edens Bone Marrow will be heading to four different states to be tested for any Neuroblastoma cells. If they can find even one, she will be eligible for many different studies however if none are found it is my understanding we will be very limited. Eden must stay on some sort of treatment, just because we cant see Cancer cells we know they are there and waiting for their chance to strike and its imperative we don't give them that chance.

Medical Info in Eden's World

2007-07-10T06:43:00.000-04:00

Just to let everyone know what is going on medically in Eden’s world. Today she will be at clinic for counts and will be going through the MIBG Scan, CT and Bone Marrow Biopsy during the rest of the week. Thursday will be the big day for the Bone Marrow. So, please keep Eden in your thoughts and I will get results of the testing process up as soon as we know.

Last of the pics

2007-07-07T21:47:00.000-04:00

OK. So here are the rest of the pics from Vac and I think I am hitting all the high points with these. We just had the most wonderful time that Eden has already asked if we can go back again very soon. On Tuesday Eden and CeCe and I went to Clinic in Orlando to have her counts checked and Riley and Justin(Riley's friend who went with us) went with Andy and Rod to Sea World and Eden and I joined them shortly after. We saw so much i cant even begin to go into it all but one of the best was seeing the Whale Show.. After watching this, it is my belief that doing something like that could be Riley's calling. He has such a deep love of any and all animals and they respond so well to him I have no doubt that if he wanted to be a trainer he would be amazing at it.

On Wed we had plans to go to Disney because CeCe and her wonderful colleague Nancy set up Dinner at the Castle for us on that day but Riley and Justin didn't seem very excited about Disney so Andy and Rod took them to Adventure Island which is part of Universal. So it was just Me, Eden and CeCe and we had a blast. We got to do all Girly stuff the whole day. Eden was able to meet Arial and Cinderella and we had a wonderful dinner at the Castle and was entertained by the Fairy godmother and the mice. As we were walking out of the Castle the Fireworks were about ready to start so we sat down and watched those. It was truly a magical day for all of us..

On Thursday we were all exhausted and spent the day lounging around the house and swimming which was very nice. On Friday we headed to Universal and adventure island and Eden decided that she would only be going on scary fast rides but she LOVED them.. We did Twister and Earthquake, and Revenge of the Mummy and Jaws and Men in Black and Jurassic Park and so many more that i just cant remember. It was 100 Degrees there every day with what felt like 100% humidity and i was very concerned about Eden getting over heated or to tired which would quickly cause her to have a fever and promptly end our Vacation so we wheeled her around in a wheelchair whenever we went to one of the parks. At some of the rides this gave us special entries into the rides and at first i felt like we were taking advantage but in the end i truly believe Eden would not have been able to make it without the wheelchair. She felt good at the end of each day and that was our goal.. I cant say much for the rest of us who walked miles and miles and miles in the heat but it was so worth every step. I do have more pictures to share in a few days from Flashes of Hope. They came to visit us while in May while we were in Philly and took some amazing photo's and they showed up in the mail while we were gone.. The Wonderful Debbie set it up for them to come and they did such a wonderful job.. I uploaded more pictures below this entry so don't miss them......

I almost forgot to Mention Eden insisted on wearing her sandals that had 2 in heals so she would be sure to be tall enough for most of the fast, scary rides and one of her most wonderful School mates Ashley who moved to Pitt sent her a "princess hat" and she wore that the whole time because it gave her another in............... she is the funniest thing ever

Pictures

2007-07-07T21:31:00.000-04:00

Long overdue

2007-07-04T20:10:00.000-04:00

Hi Everyone.... sorry for the delay. We spent 11 wonderful days on Vac in Florida and we didn't stop for one Second! Our trip started Friday the 22nd and we drove to Gatlinburg TN where we spent the night and rode the ski lift up into the Smoky Mountains and went to the Ripley's museum. Sat we headed out again and stopped for the night in Atlanta and hung out by the pool. Sunday we made the final push to Orlando. The very wonderful and generous CeCe rented a huge house with a private pool and hot tub for us to spend the week in. So Sunday we just hung out at the house and Monday we went to get food for the week and swam and headed to Wonderworks Monday night. All of the pics you see are from there. Riley and Eden had the most amazing time!!! This place is made to look like a Building that fell over on top of another building as you can see in the pictures and inside it has over a 100 interactive actives for kids and adults alike. We played Lazar tag and then went to a magic/dinner show in the building. you can see from these pictures we really enjoyed this place. I will update with more pictures tomorrow from Disney, Sea World and Universal studios and Islands of Adventure.

Thanks for checking in!

More Pics

2007-07-04T20:04:00.001-04:00

Pics from Vac

2007-07-04T19:48:00.000-04:00

Welcome God Brother

2007-06-21T12:01:00.000-04:00

Finally!!! After two days of sitting in the Hospital room, Stef had the baby with some help from the Surgeon.... He is a beautiful 7lb 9oz bouncing baby boy. Eden is truly in love with him already.. She was the first to get to hold him other then Daddy. Stef and Eden have a very special relationship and Stef wanted Eden to be a special part of the baby so she asked Eden to be his God sister. Eden plans to take her responsibility very serious....

Father's Day

2007-06-17T21:15:00.000-04:00

Today Eden and I got a quick ride in on her bike and Riley and I played around the house. I just wanted to say how much I appreciate them and Thankful for another Father's Day together.

Eden had a pretty good weekend swimming and playing. Riley and Eden had a bake sale at her garage sales Friday and Saturday. They had a great time.

Counts are up!

2007-06-15T13:11:00.000-04:00

It looks like Eden has started to Engraft.

Counts as of this morning.

HBC: 6.8 (she is getting blood but it seems to be holding better then in the last month)

Platelets: 39

WBC: 2.9

She did get blood and platelets on Tuesday but, this is the longest she has gone now without more platelets.....

Tuesdays Counts:
Platelets: 12
HGB: 6.6
WBC: 1.8

Home At Last!

2007-06-11T21:53:00.000-04:00

Eden did in fact make it out of the hospital Sunday afternoon. She no more made it home and had me chasing her around the block on her bike.. She is truly feeling good. One of Eden's great aunts is in the hospital in Huntington WV so Eden, CeCe and I took Grandma JoAnn to see her today ............there and back in 8 hours... shewwww I have no idea how we made it that fast considering it seemed we were stopping every hour to feed this child.

Because Eden's counts are not great we only stayed at the hospital for 10 minutes with Eden all masked up. So the rest of the Time Mamu visited with her sister, we went exploring. We did some shopping, Eden picked out a few new outfits and shoes to go with them and of course had to stop and feed her again and on our way back to the hospital we got just a little lost. Well CeCe just bought a new car with onstar in it and Eden was so very excited that we got to call them for directions back to the hospital. She is the funniest kid ever! She was a great sport about all of the traveling and we had a fun day!

Sorry for no new pictures today.. Having a small issue with my Camera but will get it fixed soon.

Don't forget this weekend is the last push for the Eden Benefit Yard Sale. Friday 9-3 and Sat 9-3 2590 Yates Ave Grove City. We hope to see you there!

Sunday Counts

2007-06-10T11:42:00.000-04:00

Eden is still in patient.

Saturday Vitals:

• Platelet Count: 36
• HGB: 8.5
• WBC: 1.4

Sunday Vitals:

• Platelet Count: 25
• HGB: 7.4
• WBC: 1.1

Eden has received Ceftazadine and Linezolid all weekend and Getting Red Blood and Platelets again.

Pictured with Eden is Fellow Dr.Beng Fuh he has been with us since the begining. He will be leaving Children's at the end of the month to head to the Carolina's. We wish him well and many Thank you's.

Friday Evening Inpatient

2007-06-08T18:34:00.001-04:00

Eden did receive red blood; however, her line leaked. Her bed sheets and clothes were soaked in blood. They got her cleaned up and ready for the rest of her evening. An antibiotic push was administered and another IV started with ZYVOX® (linezolid). Eden is currently eating, coloring and watching TV. I just spoke with Dr. Beng Fuh and he is working on getting one of Eden’s important prescriptions taken care of. Potassium Iodide, (SSKI®) is a medicine that protects her thyroid gland.

Her current vitals are:
• Platelet Count: 64
• HGB: 7.8
• Temp: 99.4

One of the things that have been affecting Eden is her VRE classification in terms of her playtime at the hospital. Someone ask me what VRE was so I am putting this quick summary up.

What is VRE: Vancomycin-Resistant Enterococcus?

Enterococcus is bacteria that live in the digestive and genital tracts. They are normally benign and do not cause any problems in healthy people.
Vancomycin is a powerful antibiotic that is often the antibiotic of last resort. It is generally limited to use against bacteria that are already resistant to penicillin and other antibiotics.
Vancomycin-Resistant Enterococcus is a mutant strain of Enterococcus.

Eden’s nurses and Drs handle her a bit different. The nurses and Drs put gowns and glove on prior to handling or working with her. She is normally isolated and not allowed to run the floor visiting and partying. Consumables that come into contact with Eden are used for Eden only: Like her blood pressure cuff and stethoscope. These types of items that are exposed to her are disposed of after usage along with many other items.

Clinic and Inpatient

2007-06-08T11:09:00.000-04:00

Eden started her morning today with chest pains and a fever of 102.8

Vitals today:

• Weight: 18.7 kg
• Height: 123.5
• Pulse: 114
• B.P.: 95/60
• Platelet Count: 24
• RBC: 1.86
• HGB: 5.8
• WBC: 1.4

After arriving to clinic this morning Dr. Yeager assessed her and decided to keep her for awhile, he immediately started and IV with ZYVOX® (linezolid) to fight off any microorganisms, Since Eden was complaining of chest pain we ran by X-Ray on the way to J5, she's in room 5304. Eden has had benadryl is now receiving platelets. She will get red blood as well in about an hour. That’s all I know for now. I’ll update later with more information.

Stem Cell Recuse

2007-06-06T17:41:00.001-04:00

Eden started her morning yesterday a bit pale and warm prior to her getting her stem cells back.
Basic vitals prior to the stem cell transplant were:
• Weight: 18.9 kg
• Height: 123.5
• Temp: 98.8
• Pulse: 112
• B.P.: 105/64
• Platelet Count: 25
• RBC: 1.2
• HGB: 5.6
• WBC: 11.2
Infused was 2.65 X 10 to the 6 per kg divided into two bags. Robin her transplant Nurse Practitioner infused them manually trying to control Eden being sick or in any discomfort. It helped with the discomfort and pain but not with the sickness. She got sick a couple of times, during the first and second bag. Because her HGB and Platelets were so low we also infused red blood and platelets. It was a long day at the hospital. However, near the end of all the transfusions Eden perked up a bit and that’s when I snapped this picture of her. As for the rest of the evening, Eden did not sleep that well and this morning after getting up for school had to take a quick nap before going. She made it to school in pure Eden style, let the party begin. After school, she had a hearing test to make sure her hearing aids are keeping up with her needs. She has stabilized on her hearing lose for the present time. In addition, she visited the chiropractor Dr. Cole to help with the pain and discomfort she has been having over the last several months. She states that after being with Dr. Cole that she feels better. Therefore, if it helps we will do the best to make her as comfortable as possible.

Stem Cell Rescue Tomorrow

2007-06-04T17:47:00.000-04:00

As you can probably gather from the last Update... Eden's counts were right down scary on Friday leading into the weekend. Therefore, she received packed Red Cells and platelets.

After we saw her counts, it was agreed upon by everyone that we should do the Stem Cell Rescue ASAP. She will start hydration at 9 am and then get the stems cells going by 11 am in the morning. There is nothing dramatic about it at all. It looks just like she is getting platelets only it smells like cream corn gone bad. Last time she received them she did spike a little fever for 20 which won her a night in the hospital and if it helps her that is more then acceptable.

Our hope is she will be able to make it back to school on Wed for her last day however, I feel for her fellow students as she will have a bit of a funk to her for a few days.... lol

I have decided to move the Yard Sale to the third weekend of June due to inclement weather.

We will update once Eden is done with her boost tomorrow.

Weekend Update

2007-06-03T21:47:00.000-04:00

Eden made it through the weekend, She's looking good except for the platelet issue, major bruising. Eden missed a lot of important social engagements over the weekend due to her condition. We apologize to everyone but it was important to keep Eden down a notch. When Eden had downtime, She was with her mom coloring, reading, and resting in the pool. Monday Eden will be off to school and we have Stem Cells scheduled for Tuesday morning. Dr Yeager and Dr Mosse have conversed and decided that it was important to get Eden's Stem Cells back as soon as possible. We would have infused on Monday but couldn't guarantee delivery.

Going Going Gone!

2007-05-31T15:27:00.000-04:00

That is how I describe Eden's Counts yesterday.... Her Red Blood was 6.4 and her platelets were 11 :( So she has to have a Blood transfusion and a platelet Transfusion... Her white count is still holding its own for now with an ANC of 1427. I am not sure what the plan is for a Stem Cell Rescue. I think if her ANC were low then it wouldn't be a question but we can continue to give platelets and blood and keep her in the safe zone long enough to give her body a change to fight back... I am sure that Dr. Yeager and Dr. Mosse are staying in close contact and will let us know when the time has come to get her counts up once and for all. She is having a pool party at school tomorrow early afternoon and then we will head right from there to clinic to see if she needs another fill up for the weekend. We went over to Cece's last night for a swim in the 90 degree weather and had a good time. Eden loves to jump from the pool to the hot tub and i don't know how she does it... Al thought the pool is heated to 80 the hot tub is around 103... way to extreme for me.. one or the other.....

We are having the second half of the Eden benefit yard sale on the second weekend in June with more stuff than you can even imagine. Rourke sent tons of things left over from the one a few weeks go to goodwill and we still have a complete garage full and more coming every day. If you have something you would like to donate or if you would like to help out during one of the days please send me an email. Eden and Riley will be having a bake sale and a lemonade stand.. should be very cute! I will give all the details later this week.

Long Weekend

2007-05-29T08:53:00.000-04:00

Here is hoping you all had a wonderful long weekend. Eden and Riley spent the weekend at the Houseboat with Mama Hope and Papa Ron and although i don't have a lot of detail about the weekend it sounds like they had tons of fun. One thing i got from Eden was that she went tubing ...... a few times! What more can we ask for? She is truly feeling wonderful. They got back in town around 7 last night and we ran over to say hi to Cece and swim for a few minutes and roast some marshmallows over the fire and headed home to get ready for the week.

Eden did have clinic on Friday and once again needed Blood but her platelets were still hanging in there. They are going lower and lower with each visit but so far no transfusions. We are heading back to clinic today after school to see how she is doing. Her white count has also been holding its own so far. We expect things to get a little worse before they get better so we are prepared to hear bad counts each time we visit the clinic and its so hard to say when it will happen. MiGB is much more unpredictable then Chemo in that aspect.

Maybe Mama Hope has some pictures from the weekend we can upload!

Have a great short week!!

All is Well

2007-05-25T01:59:00.000-04:00

Eden has been feeling well and going to school. Eden and I went to clinic on Tuesday and Eden did need blood but everything else was still OK for now. Her Platelets are starting to drop while her White count has gone up. Once everything kinda hits its low point we are counting the days and if it goes to long she will get a Stem Cell Rescue. Although we do have plenty of Stem Cells saved in California, we would prefer to save then whenever possible. Outside of effecting her counts the MiBG therapy didn't seem to have any negative effects on her. We love anything that helps her without making her sick. Eden and I are heading to clinic Friday for counts and things.

Penelope Jane London

2007-05-20T13:50:00.000-04:00

Penelope was diagnosed in Nov 2003. (8 months before Eden) She died yesterday morning in the loving arms of her parents. You will never be forgotten!

We have watched so many sweet, smart, vivacious, Innocent children die over the years and my heart asks the question why isn't this the topic of every discussion on earth? There has to be an answer? There has to be a way to stop this from happening even one more time? There must be a way to save these children? My head tells me this is a completely unrealistic and selfish feeling but for today i will let my heart over rule my head. Penelope was a precious 4 years old. Please pray for her family as their hearts are breaking and their family will never again be the same.

Heroes and Warriors

2007-05-19T20:30:00.000-04:00

Today we have said good bye to one of the most amazing warrior princesses ever created: Penelope London. Penelope and her family have fought this nasty beast called neuroblastoma since 2003 and have made HUGE strides in the pioneering of new treatments for this cancer. Penelope is our hero. She has fought bravely, with no complaints and always a bright attitude.
Penelope London will always be remembered as the true Princess that she is. Thanks to the paths that she has broken, many children have been able to fight this beast and remain with their families for longer then expected.

Clinic

2007-05-15T18:05:00.000-04:00

Eden had clinic today and all was well. Her WBC was 2.39, Red was 8.4 and Platelets were 153. ANC 1090. She will go back on Friday to check them again. Once her ANC hits 750 she will need to start her shots again. When she woke up Sat her back was bothering her somewhat and seemed to effect her throughout the day. We decided to send an email to Dr. Mosse to see if she had any insight into the pain. She responded on Sunday and said she would double check Edens scan for any spots on her spine on Monday. Her email yesterday said her spine looked completely fine. She has not had the pain since Monday so it may have just been from lying in bed all week. Eden has been seeing a chiropractor to help with some of the muscular discomfort. So, off to Dr. Mike she goes. She is currently feeling good and has made it to school all week so far..
Thanks for checking in!

Friday Morning with the Horses

2007-05-11T23:52:00.000-04:00

This morning we had some time to kill before we had to leave for our flight so we went for a walk and ran into a horse.... Eden fed him some cereal and thought it was the funniest thing ever. She said it tickled her hand. She was so cute with the horse that I was compelled to pay for a ride. What's a mom to do?? It turned out to be a very enjoyable half hour. We learned some of the history of Philly and Eden asked lots of questions and she was so very happy.. She told me time and time again throughout our day how wonderful this morning was.. She is feeling great and currently having no problems. Dr. Mosse sent me an email this morning to let me know Edens scan showed a few places that we are not able to see on the "normal" scans but over all her disease is very minimal. She should continue to feel well for awhile and in probably 14 days or so her counts will start to drop and she will need probably two platelet transfusion a week until her counts come up on their own or she gets a stem cell transfusion. Either way don't forget to give Blood whenever you are able. Not only is Eden counting on you but 1000's of others need your help also! Please look below for more pictures....

More Please Touch

2007-05-11T23:41:00.000-04:00

Look there's Goldilocks with the three bears................ oh wait that's princess Eden! There she is walking through water and playing Alice in Wonderland. She also built a house and laid tile and did laundry and ironed everything... This place sounds like an adults worst nightmare but kids seem to just love it.

Please Touch Museum

2007-05-11T23:33:00.000-04:00

How cute is this? This is the kids supermarket at the Please Touch Museum in Philly. Eden loves going to this place and begs to go every time we are in town. The Ronald McDonald House usually has free passes for families so it works out perfect.

2007-05-11T13:17:00.001-04:00

I'm heading to the Airport to pick the Princess up here in just a bit....

She is wound tight and ready to party.... I talk to her several times and she sounds wonderful. I'll give you an update later.

HANGIN IN PHILLY CONT..

2007-05-09T13:34:00.000-04:00

I am not sure which order the pics will download in but should be pretty easy to figure out what is what. Three are from this morning with her doing what she does best. EAT.... They have a wonderful system set up here at CHOP. It is basically room service. They don't deliver Breakfast, Lunch or Dinner. When she is hungry she looks on a menu and we call and order food and in about 20 min it is delivered..... how wonderful is that??? And the best part is she can order breakfast all day!! This morning she had a Mushroom Omelet and two pieces of Turkey sausage and french toast sticks and then we had to order a second Omelet and they mistakenly brought her a Pizza with Mushrooms so she ate that while waiting for the Omelet...lol I just called to order her Frosted Flakes and Rice Crispes so she will be eating again any time now.....

I also added a picture of what the room looks like while she is getting the two hour injection of MIBG. She started asking first thing Tuesday morning... "am i radioactive yet?" and asked right up until the minute the injection started.. So Cute. We kissed and hugged and hugged and kissed until they told me i had to move away... trying to get every second in to make up for the days we will not be allowed to touch. If it wouldn't jeopardise the hospitals ability to give the drug here i would be more then willing to risk myself to continue to hug and kiss her....

The final pictures are of her on Monday morning at the Cereal Bar. She loves this place and as soon as she knows we are coming to Philly its the first thing she asks to do. I have no idea why she loves this place so much but if it makes her happy it is more then worth the $5 for a bowl of cereal.....or in her case two bowls... Her first bowl was fruity Pebbles with M & M's and then a bowl of Lucky Charms with extra Marshmallows.

She had a Foley Cath inserted on Tuesday morning that keeps the MiBG from sitting in her Bladder but once again it didn't work very well and leaked from the start. So i had to get up every two hours to change the bed where it was leaking.. They finally decided to just remove it this morning. So things should be better for her. We will still have to get up every two hours to use the bathroom but as least she wont have to lay in it this way.

We will probably be discharged tomorrow sometime. Her levels should be good to go when they come up to check around 10 in the morning but we will have to wait until they can get her in for the MiBG scan before we can leave. This scan is basically just to get a really good picture of her current disease. The levels of MiGB are more then 10 times what they would give her for a reg scan so just like last time we will see a much worse scan then we saw two weeks ago but it is completely expected and nothing to fret about.

I had a very long conversation with Dr. Mosse yesterday and she is very happy with were Eden is at right now and we talked about what is next and there are many options to choose from based on what her scans show 5 weeks from now.

I wanted to ask for prayer for a little girl we met here yesterday. Her name is Melanie and she is 3. She also has Neuroblastoma. She had MiBG Therapy here a few weeks ago and just had her Bone Marrow Biopsy and from what i can get it was worse and today was her CT and MiBG Scan.. I see the worry in her mothers eyes as she waits for the Dr and i know that feeling so well. Please keep Melanie and her family in your hearts and prayers today.

HANGIN IN PHILLY

2007-05-09T13:20:00.000-04:00

Philadelphia Day 3

2007-05-09T02:00:00.000-04:00

The MIBG Treatment started today about 2:22pm and was finished infusing about 5:30pm. Her reading at 5:30pm was 30; we need the radioactive reading to be below 7 before being released from the hospital. As for the day, Eden was a bit down when I spoke with her earlier but she’s looking forward to being able to go to the Touch Me, Feel Me Children’s Museum on Thursday. Therefore, she has a goal.

Philadelphia Day 1 and 2

2007-05-08T05:31:00.000-04:00

Eden made it to Philadelphia on Sunday about 10:00 am. The Ronald McDonald House was her first stop for her usual fun filled party. Eden and Lisa managed to get a nap in because there day started at 3:00 am to get to the airport and make there flights. At CHOP on Monday, Eden was admitted to start Pre-hydration and a RBC transfusion. Today "Tuesday" she will begin the MIBG treatment.

Front Page!

2007-05-02T10:06:00.000-04:00

Eden made the front page of the Columbus Dispatch this morning! The article was mainly to recognise the Amazing Seniors at New Albany High school for their selfless act of inviting Eden to their prom and making it such a wonderful night for her. Check it out at:

Columbus Dispatch

Friday is the big kick off off the third annual Benefit Yard Sale for Eden. We hope to see you there and from what i hear there is more this year then the last two years combined!
6560 St Rt 605 in New Albany..

Thanks for checking in!

New Prom Pictures Added

2007-05-01T23:47:00.000-04:00

Please scroll down to see the new prom pictures added.

If anyone has prom pictures and would like to email them to me it would be greatly appreciated.

Please email them to hondale@sbcglobal.net

Include Prom Pictures in the subject line.

Thank you!

A New Day!

2007-04-30T14:50:00.000-04:00

Eden is feeling great! She had a wonderful weekend filled with friends, family and shoe shopping and more Birthday Celebrations... We had clinic this morning and all of her counts were fine so no transfusions and she can stop her shots for White Count....Go Eden!! Her Liver Enzymes were a bit higher which is of some concern. It was decided late last week that she would not have surgery to remove her Gull Bladder because it would cause a delay for MiBG. Sometimes you have to pick your poison... Literally! She is on Medication for the Gull Bladder and a strict low fat diet. We just need to keep things calm until she gets through MiBG and Stem Cell Rescue and her counts recover... is that really asking to much?? LOL She made it to school for most of today and should make it for Tuesday and Wed. She has labs and a CT Scan scheduled for Thursday to see if her Organs still look enlarged. She and Riley are going to school on Friday but leaving early so we can Head to MI for special event for someone very close to us and then Eden and I are flying to Philly from Detroit on Sunday.

I know we told you last week that her MiBG looked much better and we found out on Friday that her Bone Marrow is still clean. She is going into MiBG next week with about the same amount of NB as she had last Aug when she did it. We are very pleased that the Chemo is still working for her but that will only last so long. A cure must be found!! Please don't forget about the Yard Sale Thursday , Friday, Sat and Sun at 6560 St Rt 605 in New Albany.

Black Tie Affair ~ Prom 2007

2007-04-27T15:58:00.001-04:00

The long awaited Prom Picture.

MiBG Scan

2007-04-26T12:29:00.000-04:00

So here is what you are looking at. The top Scan is from yesterday and the bottom is from Early March(the last scan) The one from yesterday is an improvement! I cant say for sure how much of an improvement but I think it looks much better. You can still see some of the spots but they are much lighter. Prayer and Chemo are a miraculous thing. You will see very bright spots in her Jaw and in her Belly area but those are normal uptake and not necessarily NB.

On the Down side... We were informed this morning that Surgery feels Eden needs her Gull Bladder out. For her this is much more serious then with most people because of her White Count. Infection is a concern with any surgery but with a child who has a very compromised immune system the bar is raised! Dr. Yeager is going to speak with Dr. Mosse to weigh the risks and set a plan. If we do this next week her white count will be better but still far from great and there is concern about going into MiBG right after surgery but if we wait and it should become more urgent while going through MiBG Therapy the complications only get worse. We will keep you updated on the plan.

We do know that we are heading to Philly on the 7th and she will be injected on the 8th so i would guess she will be discharged on the 11th.

We are expecting to be discharged today!!! WOOOOHOOOO I want to thank everyone for all of the wonderful and funny cards. She has 40 sitting here that she loves to go though and look at time and time again!

Inpatient

2007-04-24T14:42:00.000-04:00

Eden is in fact inpatient, for how long we don't know. She really seems much much better today! she has not had fever since yesterday morning and she is up and moving again. We did have a small scare this morning when i showed up at the hospital the nurse had just come in and told Dad that she was NPO and that a surgery consult was on their way..... ??????????? It took me getting a little loud to find out what the *^&% was going on. Turns out that when she had her CT scan last night they had not looked at it until this morning and her Liver, pancreas, gull bladder area was enlarged.

It seems an Intern may have received these results first and put the orders in without giving us a heads up as to what was going on. I am not at all upset because i know they are learning but it was a very tense 45 min up on J5 and few people may have been on the receiving end of my "concern" ..lol Fortunately they are very good at understanding the parents frustration at times. I finally spoke with Dr. Yeager and he feels her blood levels do not indicate a major problem so she will just be watched closely to be sure everything goes back to normal. the swelling could have been from meds or infection or any number of things. Our biggest concern is that we don't so anything to irritate things further and prevent her from going to Philly for MiBG Therapy. If you would like to send her a card here is the link:She is on J5 room 14.

Again sorry we still haven't been able to get the airing of the prom up. we are trying to extract it from my DVR.....

Sorry for the Delay

2007-04-23T08:27:00.000-04:00

I'm sorry it has taken so long to update about the Prom and her Birthday. Eden ended up being pretty sick Friday night.. I believe she had/has a sinus infection on top of very very low counts. She refused to miss the night though and I couldn't find it in my heart to tell her she couldn't go. So we pushed through and she made it through the most important parts. Everyone there was so happy to see her and she looked beautiful as did everyone there.. They had a special presentation where she was crowned Prom Princess and she received a standing ovation. It was so very special and we feel so lucky to have been a part of it. These seniors were more then willing to share their special night with Eden and it touched my heart so deeply.

We had to leave right after the little ceremony and head home. she fell right to sleep and slept through the night. She seemed to feel a little better in the morning but not much and of course being her birthday and all i felt so bad for her. She pretty much laid around all day sat and Sunday so maybe we will just pretend that next sat is her birthday and start all over...... lol

I know everyone is clamoring for pictures and i promise Rourke will get them up soon. We are also trying to find a way to put up the news broadcasts for everyone. Unfortunately shortly after we arrived home on Friday night i received a call from the Hospital that my Father had been in an accident so my focus for the weekend was him and Eden. He has some fractured Ribs and lots of cuts and bruises but was released from the hospital on Sat and pushing through the pain. Eden is not feeling better but maybe worse this morning so she and daddy are on their way to clinic where she will probably be admitted for a few days. I will keep you updated as i know more.

Thanks for checking in.

The Big 7

2007-04-21T14:45:00.000-04:00

HAPPY BIRTHDAY SWEET GIRL!!!

She came into this world 7 years ago today at 3:38 pm causing trouble and not much has changed. She was the most Gorgeous baby i have ever seen.. Dark black hair and great color to her skin and so tiny even at 8lb 9oz. I also knew she would be my wild child and i could not have been more right. Eden you will always own a piece of my soul!

It has been a very busy few days and Rourke or I one will update more on the Prom later today or tomorrow.

By the way

2007-04-19T01:00:00.001-04:00

I guess we forgot to mention that Eden's date for Senior Prom is her stepbrother, Rodger. He's a senior at New Albany and felt it was important for her to be there, Along with the Cheerleaders and Kaylee and the rest of the class. Thank you to everyone involved.

There is a rumor that there will be a special presentation by the Seniors to Eden.

In regard to the counter on the blog, if you double click on it you can view all of the cool options there, too.

2007-04-18T14:32:00.000-04:00

All is well in the world of Eden Today. She went to Clinic on Tuesday to get Red Blood and was able to go to school all day today and should be there all day tomorrow.

I have many events to cover today so hang in there with me.

First. SATURDAY April 21, 2007 As far as Eden is concerned it should be a National Holiday. She will be the big 7. (There have been many times over the last 3 years when I wasn’t sure we would ever see this day.) Eden is so excited she has now gone from counting down the months to counting down the weeks to counting down the days that we are now counting down the hours. Please join me in prayer that she sees 70 more.

Second. I need to thank all of the wonderful staff and students at New Albany High School for being so kind and caring to our sweet Eden. This Friday she will be attending her first Senior Prom. She could not be more excited about it either. She has her dress and shoes and Mama Hope has made her a shawl and we have some special bling for her little head. These kids are Extraordinary in there efforts to support Eden and share a little of their night with her.

Third. We are having the third annual Garage Sale to benefit Eden. It will be held on May 4th and 5th from 9 to 5 and the 6th from 11 to 3. It will be at Hope Adams House at 6560 St. RT 605 in New Albany. If you have items you would like to donate you are welcome to email Rourke or myself or Call Hope at 614-855-1050. There will be many new items with tags still on them and most items will not be marked with a price and will be sold for Donations.

Forth. The Radiothon is back and Eden has been asked to be apart of it once again. It is held in the lobby of Children’s Hospital for 4 days to raise money for Children’s. Tune in to hear her on Friday morning between 8 and 9 am on one of the following stations. Magic 98.9, Power 107.5 and Joy 106.3.

And finally. I have learned to play with the counter on Eden’s blog and have learned some very interesting things. I wanted to share with you how many people have been to her site today as of 11am. 116 people from the following areas have been to her site this morning.
Massachusetts, Texas, California, New York, Oklahoma, Utah, Maine, Illinois, Alabama, Pennsylvania, N Carolina, New Jersey, Missouri, Florida, New Hampshire, Michigan, Canada, Denmark, District of Columbia, Spain, United Kingdom, Poland, Italy, Australia and China and most cities in Ohio. I would like for each one of you to know that your support has been a great influence on Eden’s well being and we couldn’t do this without you!

Chemo Done

2007-04-16T20:20:00.000-04:00

Today was the last day of Chemo! WoooHooo.... She has done amazing with it as you can tell from the pictures above. Two are from this morning at Clinic while she was doing what Eden does best. EAT! Second set of pictures are of Riley and Eden cruising in her pink Corvette. The Hat was a very special gift received today from Carol Taylor-Gauthier. We have emailed back and forth a few times over the last few weeks and she wanted to make and send Eden a hat or two and low and behold today 3 amazing hats showed up. The one she has on is her Favorite.. it is the softest thing I have ever felt and Eden loves how it feels on her bald little head. I will try to get more up close pictures of all three hats if i can get her to slow down a little. Don't be surprised to see pictures of her in the hats while in bed asleep.. That may be the only way...lol Please Check out Carol's hats at http://stores.ebay.com/upfront . Thank you so much for your generosity Carol!!

Eden's Red Blood is already low or still low so she will have to head back in the morning for a Transfusion and then to school. She will go back on Thursday for counts again and then next week we will start Scans. From what i can gather we will head to Philly the first week in May.

Chemo Day 1

2007-04-13T18:30:00.000-04:00

Eden completed her first day of her Topotecan and Cytoxin, She is still running Potassium chloride and will continue throughout the night!. She has had an IV dose of Mesna and Zofran to get things started and the another dose of Mesna about 3 hour after her topo/cytox. I case your wondering the clear line from the black bag is connected to Eden's port. The activity that I'm about to show you I had to put a stop to of course. I'm having a little trouble keeping her down. I think that this explains how she's feeling! Can you believe this?

Heaven welcomes another angel...

2007-04-12T14:12:00.000-04:00

We have lost another warrior to neuroblastoma: Kendall Jackson.
Here is his link: Kendall Jackson
Please leave a message in his guestbook. This happened very suddenly and the family didn't have time to prepare.
Eden's chemo has been pushed back to start on Friday. She needed a red blood transfusion to prepare for the start.

Slow Progress

2007-04-10T12:46:00.000-04:00

I just spoke with Rourke who has been at clinic with Eden all morning and they have decided to wait until Thursday to start the chemo. Her red and white counts are fine, but her Platelets are only at 40,000. That tells us they are starting to hold their own and on their way up but not there just yet. Normally they would require them to be 75,000 but we are only looking for 50,000 to start.

She only received this chemo at 75% of what she got this time last year which tells me that her body is really having a hard time recovering from even small doses, which is to be expected. Her little body has been through so much treatment in the last 3 years that I am just grateful that she is tolerating it this well.

If we don’t find something that knocks the cancer down so it can’t get up for awhile we will slowly start to run out of options of drugs that she can tolerate and the Cancer won’t hesitate to take full advantage of our misfortune and treat her body like a play ground. I feel so strongly that the cure is out there but so helpless that I can’t do anything to find it.

I know there must be a reason that she has to go through all of this but Lord Help me, I just don’t see it!

Please keep penelope in your prayers, she is only 4 years old and such an amazing spirit. http://www.caringbridge.org/ny/penelope/.

How do I express how unfair I think this is without sounding ungrateful for what we have?

Wonderful Easter

2007-04-09T14:13:00.000-04:00

Eden is officially bald again! By Thursday evening she has pulled out most of the hair on the top and front of her head but the rest wasn't ready just yet so she asked Andy to shave it so she wouldn't look like a little old man. lol She is completely fine with and had no hesitation about going out in public bald again. Friday night we headed to Dave and Busters with CeCe to celebrate Riley's birthday once again and as always had a blast playing games and eating. Eden was trying to get this stuffed rabbit out of the claw game and almost had it and lost it.. about 10 minutes later a man found us playing air hockey and handed Eden the stuffed rabbit. He was standing behind her and saw her trying to get it. His kindness almost made me cry. An hour later another man walked up and handed her a $10 game card for no reason. Its amazing the world we get to see having a sick child and i wish that more people were able to see such kindness without the tragedy that goes with it. Just as we were about to leave, Eden was getting her picture taken in one of those booths and she fell backwards off of the stool and onto the floor. She was complaining about her belly hurting pretty bad and because her platelets that day had been 23 i felt a trip to the ER was necessary. I know it wouldn't take much for internal bleeding with platelets that low. We dropped Riley off at home and me, Eden and CeCe headed for Children's. They did an ultra sound and X-rays. It was a very long night but worth it for peace of mind knowing she was OK.

She spent most of Sat evening over at Uncle Bill and Aunt Pam's playing with Mick and coloring Easter eggs and drawing pictures. When she came home she and i made a bunny cake for Sunday Dinner with my family and we had a blast. The Bunny was covered with shredded coconut and she was eating as much as she was putting on the cake..

We got up Sunday and went to Church for a wonderful Easter service and then headed to CeCe's for breakfast and to find Easter Baskets. The kids loved finding them and all the good candy that went with it. they also each got 2 blue jackets Bobble heads. Papa Jim had also dropped of Easter baskets for them and Riley's had a race track in it and he played with that for hours with everyone he could rope in. Our very dear friend Debbie (who has been working non stop on projects for Eden) sent both kids little Easter baskets that the got on Friday. they both get such a kick out of getting mail.

My Brother is going to send me the pics he took of the kids hunting Easter eggs yesterday and i will get them up..

Daddy took Eden to clinic this morning and her counts are still a little shy of being able to start her next round of chemo so she is there now with Mama Hope getting blood and we are keeping our fingers crossed that she can start tomorrow. I will keep you updated as I know more.

HAPPY BIRTHDAY RILEY

2007-04-05T08:47:00.000-04:00

HAPPY BIRTHDAY RILEY!! YOU ARE AN OFFICIAL TEENAGER NOW. LORD HELP US ALL!

Riley, my sensitive son. An old soul. So much to teach. My son Intelligent, quick witted, cheeky too. At times I will dispare, what to do. My son. My son. Whom makes my heart burst with joy. My son, my only boy. Inquisitive looks, lust for life. My son.This little man of mine, could not be more precious were he made of gold. My son I steal into his room at night, to watch him sleep. Lent to me by god. Mine for a while to keep. My son.

Born April 5th 1994 at 6:37 pm weighing in at 9lb 14oz.Two and a half weeks late (and has been late ever since) He was such a good baby. I remember calling the Dr. because i thought something was wrong with him because he never cried. He was such a beautiful baby and so perfect. I didn't get a chance to jump on yesterday to wish Mama Hope and Aunt Hunny a happy birthday but the kids did get to call and sing to Mama Hope. Happy Birthday One and All!!!

Riley did get his cast off yesterday.....wooohoooo However the pain is much worse now. Because the muscles have not been used in so long he is having a hard time moving his leg. All in good time sweet Riley.

Eden is doing fine. She did get blood yesterday as she was a little low. Her platelets were up to 30,000 (not good but better) so they are going to hold off until Friday to see where she is. She is feeling great with tons of energy and its so hard to keep her still and i hate so much to continue to remind her that she still has low platelets because i know she is just trying to be a normal kid. Eden still has all of her hair and i had a chance to speak with Dr. Nick yesterday and he said it may hang in there (pardon the pun) because she only got 75% of the chemo that she was given this time last year. Eden was very upset the other morning while i was brushing her hair and she noticed it had not yet started to fall out. She asked me if this means the chemo is not working. It truly breaks my heart that she worries about such things and amazes me at the same time. As we know that is not at all the case because her counts are falling falling falling and even if they were not it would not be any indication of how the chemo was working on the cancer. While sitting in Clinic on Monday discussing the next few weeks with Nick i mentioned that Edens last Bone Marrow aspiration was done on the front of her hips in Philly and that Rourke thought it was a faster healing time for her and she piped in and said no way i want it on my back.. So Dr. Nick told her it didn't need to be decided now and could be done right up to the time she is wheeled in for the procedure. In my mind i felt like i was in the middle of a very sick game of "THINGS YOUR SIX YEAR OLD SHOULD NEVER HAVE TO DECIDE" Things nobody should ever have to decide.

Afternoon update: I may have spoke to soon. Eden is now pulling her hair out by the handful...... She is having fun but Mommy's belly is doing flips! The hair will probably be gone by nightfall.

Good Week

2007-04-03T10:43:00.000-04:00

As you can see we made the most of our weekend! Sorry it has been so long for an update. Eden spent last week with Daddy and all was well. She made it to school each day with no problems except Thursday she had to go to clinic and needed red Blood. Friday night she was able to spend the night with Micah and she had a wonderful time. Thanks Micah! Sat night we headed to the Buckeye Hall of Fame Cafe and met up with the crew from Mr. Tire of Columbus. They were having a fund raiser for Breast Cancer and you could pay to put a pie into the Owner Clyde's face. As you can see Eden loved doing that. (other pics are Eden with Mr. Buckeye, Eden with Kelly, Eden with Ella(breast Cancer survivor) Kelly is a Co-worker of mine and a huge Eden fan and Eden loves her so much. Thanks Kelly for the invite. Everyone there made little Miss Eden feel like a star. Monday Morning we headed to Clinic and we could tell that Eden would need platelets. Poor little thing looks like she has been beaten! Her Platelets where 8,000.... They should be at least 150,000, so no biking riding for her. She spent the after noon with her friends Ally and Lil and played her little heart out and headed home to ride in her barbie car. Its the only thing i feel save in letting her ride on right now. She will head back to Clinic tomorrow for probably more platelets and Riley has his appointment to see how his ankle is doing and with any luck he will get his cast off or at least get a smaller one.

Friday night at the Circus!

2007-03-26T08:36:00.000-04:00

Friday night we went to the Circus and they had a Carnival there. Aunt Cece and Uncle Bill and Aunt Pam where there and Cousins Mykaila and Makena and Tim and Sara and then Bonnie and Vaughn come up from Dayton and of course Andy and I were there.

How many people do you know that can spend 5 days getting Chemo and be ready to party come Friday night? Eden rode every ride there including the Round up where you stand up and it spins you silly.. SHE LOVED IT! As you can see she ate everything in sight and is feeling GREAT! She Loves to play with her Cousin Mykaila. Riley also managed to ride all of the rides even with his cast and they both really enjoyed the Circus.

Sat Stef came up to spend the weekend and Eden and Riley were so excited to get to see her big Belly as she is now almost 7 months Pregnant. They also got to feel the baby moving around which was so cool. Eden is so excited for the baby to be here. She says that when we aren't around she gets to babysit him. lol Stef has asked Eden to be his "god sister" it is all so cute!

Sunday we went over to Cece's to have bunch with Papa Jim and spend some time with him and we worked on the pool for awhile trying to get it ready to open next month and then had Dinner at Uncle Bills and headed up to get Easter Pictures before Eden loses her hair. We were doing this exact same thing this time last year as she was on the same Chemo. The Pictures turned out great and as soon as we get them back i will have them up on the website.

Dad met up with us right after pictures and Riley and Eden headed off with him for the week. Eden will be back in school all week with the exception of Thursday when she has to run in to clinic for labs. Her hair will start to fall out sometime this week and she told me she cant wait because hair is just to hot in the summer...lol

Thanks for checking in on girly girl!

Thursday Chemo

2007-03-22T17:13:00.000-04:00

Mama Hope took Eden for Chemo today. We worked on spelling words and first grade homework while we waited. We also played "Wig Out", a card game. Of course, Eden won!

Updated by: Mama Hope

Over the hump

2007-03-21T18:13:00.000-04:00

Three days down and two to go. Eden is still feeling great with no side effects of the chemo so far! The only problem she has that they have so much fluids running through her little body that she has to pee every few minutes which we have turned into our own little joke and laugh about.... She and Riley are outside right now enjoying the warm weather and we are hoping it holds up though the weekend so she can ride her bike. She asked to ride today but i could not say no fast enough considering she has her port accessed and tubes running from it to her saline pack that is strapped to her back... Can only begin to imagine the can of worms that would open... lol And of course poor Riley is still in his cast. We were hoping they would cut it down below his knee or even give him a walking cast today but no such luck. He is stuck in this big cast for at least 2 more weeks at which time he will go back for more X-Rays. We had to run to Staples last night for something Riley needed for School and walking in I just had to laugh looking at us.. Riley and Eden asked why i was laughing and i told them all together we were one big walking handicap. Riley and his cast and crutches and Eden and her hearing aids and big bag of fluids hanging from her back and tubes running everywhere.. sometimes its either laugh or cry and laughing is always my preferred choice.

The Longest Day

2007-03-20T08:34:00.000-04:00

Monday was the worst day of this week. We showed up at 9am and they started running fluids on Eden. They have to see her urine diluted to a % before starting the Chemo and it took 6 hours to get there. Once we get to that point it only takes about 1 hour and 15 minutes for her Chemo to run. The rest of the week will be better because we will run fluids all evening and night at home from this point forward. We took tons of things to try and keep her busy and we always have the TV to fall back on but she still gets a little bored. Unfortunately she is stuck in one of the isolation rooms because of the VRE she had last year. As you can see by the pictures i took yesterday she took a little cat nap and then played most of the day at the little table we set up while Mommy tried to work. I believe she came close to eating her weight yesterday.. Thought it would be fun to try and list what she ate yesterday. Cereal, English Muffin, Grapes, Kudos's M&M bar, 3 bags of hulless cheese popcorn, chicken tenders, onion rings, three musketeer bar, princess pop tart, baby bottle pop, chicken strips, mashed potato's and gravy, corn, role...... I could not have been happier to see her eat all of this and i hope it continues. She seems to be feeling fine and we talked yesterday about her losing her hair and she is OK with it... We don't feel there is any need to go deep into any detail with her about the Cancer getting worse as a life of Chemo is all she knows and doesn't really pay attention to one V's another. i am sure on some level she understands that the change wasn't good but she knows we are always there to talk to her whenever she wants and we never hide anything from her. I kinda tried to make this a fun week for her by having a different person take her to clinic each day so she wouldn't get bored with old Mom. So today she will be there with CeCe (which i am sure will make this one of her fav days) and tomorrow it will be Eden, Me, Riley and Andy. Eden and Andy will go over to clinic while Riley and I go across the street for his appointment with the Ortho about his leg. Thursday will be Mama Hope and Friday will be Bonnie (Andy's mom) This is also a huge help to Rourke and I as we try very hard to continue our work schedules for as long as possible.

I would like to mention a wonderful Women named Debbie who we met around about way through the website. Deb has been working tirelessly to put together a raffle for Eden. She has been hitting up everyone she knows and doesn't know for items to raffle off. I feel awful that i have been very little help to her as right now my plate is so very full but if you have any ideas or would like to give her a hand please feel free to email me and i will get you in touch with her.

Thanks for checking in on our girl!

The Plan

2007-03-16T12:02:00.000-04:00

Rourke and I had a call with Dr. Mosse today for about 45 min and a plan is in place. First off she does agree that the Disease has progressed but maybe not as bad as we thought... But either way it tells us that the meds she is on now are not working. Eden will start back on the Topo/Cyclo on Monday in the Clinic as outpatient and she will do two rounds of this chemo. Some of you may remember this from past March. Its the same drugs. They worked very well for her then improving her Disease by more then 70% and it wasn't extremely harsh on her. She will lose her hair....no doubt this time..lol But i think she will be completely fine with it.

After the two rounds of chemo we will do scans and if we see things looking better then she will go to Philly for MiBG Therapy once again. We did this back in August of last year and had amazing results from it. If all goes as planned we will be heading there around the last week of April or first week of May.

Lack of Detail

2007-03-15T09:30:00.000-04:00

We realize you all may have gotten the idea of how our day went yesterday based on the pictures posted and I am sorry there was little communication to go with it but we just really needed a minute. This came as a very big surprise to all of us including Dr. Yeager. Eden has been feeling great and had no pain which is unusual considering the progression we are seeing now. Obviously things are not good based on what we are seeing. (at least 10 to 15 new spots) We spoke in depth with Dr. Yeager right after the scan and he will be working with Dr. Mosse and Dr. Maris today to come up with a plan. We of course have told them what we would like to do and so now we will get their professional input and put things together. Neuroblastoma won this battle but we are still ahead on the war! Eden has an amazing group of Doctors on her side and we are no where near ready to give up!

We have received so many wonderful emails from Eden fans sending love and good thoughts and they mean so very much to us! I always try to prepare myself for the worst at scan time so that i am not completely devastated if its bad but i don't really think it works....lol i truly believe these are emotions a parent is not equipped to deal with.

I will update when we have a plan.

Thanks

MIBG Scans

2007-03-14T13:48:00.000-04:00

Here are pictures from today's and previous scans... The photo from 12/21/2005 is normal and what the results should be. As for today's scan, well you can fill in the blank. Were talking with Eden's Oncologists to figure out a plans.

Today!

Eden's Trip to CHOP in January of 2007

Relaspe from about a year ago........

Normal...... NED... No Evidence of Disease

The Amazing Tumbling Riley

2007-03-13T09:37:00.000-04:00

We got to spend another fun filled evening at Columbus Children's hospital yesterday only not for Eden this time. Shortly before the end of the school day, Riley decided to take a tumble down the steps of the school and fractured his ankle. As you can see from the picture i took this morning the cast goes from his toes to his tush. He is very wobbly on the crutches but i am sure he will learn to master them over the next eight weeks!

Eden is doing fine and feeling good. She will have clinic today and her MiBG injections and tomorrow she will have her scan. Extra prayers please!

We will let you know the results as soon as we have them.

A day in the Life

2007-03-07T14:18:00.000-05:00

Sorry we haven't updated lately. No news is good news! Eden has been fine. She is very tired every night and seems to be taking naps here and there but considering she IS on a chemo regimen i think she is doing great. She had labs on Monday and all of her counts are fine and she was up a pound and grew almost an inch over the last month. After Clinic she went to spend a few hours with CeCe and of course they HAD to go shopping for Eden's Easter Dress and Eden insisted on trying all of her favorites on. She loves her CeCe sooo much and i don't know what i would ever do without her emotional support!

Last night Eden was invited to help out at a Hats For Hero's event put on by the Columbus Blue Jackets Foundation at Mongolian BBQ. It was a huge success and Eden and Riley had a wonderful time. Rourke took tons of pictures and will get them up here soon.

I had a few people tell me they couldn't use the link i sent for Edens shop so here it is again.

http://www.cafepress.com/edensshop

We have already bought many items from the sight and will start to put pictures up soon. If you decide to purchase Eden gear we would love your pictures as well.

Thanks

Eden and Dad Hair Update Back to Normal!

2007-03-04T16:09:00.000-05:00

Eden and Dad Pink/Blonde Hair Update

2007-02-28T20:02:00.000-05:00

COOLEST WEBSITE EVER!

2007-02-26T12:34:00.000-05:00

You must must check out this website! I cannot even begin to Thank our friends from Circle of Hope for this but i will say that all the time i was looking at the website it was through tears from the kindness of these wonderful people!

http://www.cafepress.com/edensshop

I have been so bad the last few months. Because we don't update the website much and mostly focus on the blog i completely forgot there was a place to leave messages for Eden on the Website and today i went in there and found tons of messages for Eden so i have printed them out for her. Thank you all so much. For those of you who are not very familiar with Blogging you can also leave comments for her at the bottom of each post we leave on the blog. If you click on the word comments you can leave a message there. I promise to be more diligent about printing off her messages from the website as well....

Moving over the hump

2007-02-21T10:27:00.000-05:00

We are officially half way through the week! Of course the kids had no school on Monday and I was off of work so we tried to make a day out of it. Eden and I got up early and headed to clinic for labs and quick peek for Dr. Yeager and to get her meds for the week. All of her Counts are doing fine. WBC=4.7, Hem=11.6, Platelets=175 with an over all ANC of 2300. Dr. Yeager was happy to hear about all of the energy she has and she had gained a little weight.

After leaving clinic we went to the house and grabbed Riley and Andy and headed to Dave and Busters for lunch and a warm afternoon playing games. The kids loving going there and always have a blast. They ended up with about 1800 tickets that we talked them into saving for next time so they could get something really great.

By the time we got home it was coming on 5:00 so the we decided if we were going to hit the hill for a little sledding we better get to it and CeCe joined us. I have never laughed so hard as I did watching Riley and Eden going down that hill. Eden was all bundled up in her snow gear so she looked like a big pink puff and she would put her sled at the top of the hill and take 10 or 15 steps back and run at the sled and jump on it. The funny part was half the time she didn't get all the way on it and it would go for a few feet and then she would just kinda roll off of the sled and just lay there because with all the stuff she had on it was hard for her to move.

All in all it was a great day!

Monday night she start her Chemo back up (which of course she was not happy about all of the additional pills and liquids) But in the end she got them all down. About 1:30 in the Morning she started throwing up so we got her all cleaned up and her bed chanced and she fell right back to sleep and has been fine every since. We have Zofran to give her at our discretion but we try to hold off until we know she is going to need it because we don't want to put anything more in her body then absolutely necessary. After that night we have been doing the Zofran as a part of her normal routine and will continue through out this cycle.

Jym Ganahl's Igloo Continued

2007-02-19T12:36:00.000-05:00

The kids even made it on the 6 o'clock news Saturday on NBC 4 Columbus.

Jym Ganahl's Igloo

2007-02-19T12:21:00.000-05:00

Jym Ganahl invited us over on Saturday to play in his 2 story igloo. We had a great time. The kids then went off and built a fort in his backyard as well. It turned out to be about 4 ft tall. They had a wonderful time. Thanks Jym

Snow Days

2007-02-19T12:04:00.000-05:00

Riley and Eden having a great day off of school. Riley was teaching Eden to snowboard too.

Stinger, Eden and Rick Nash

2007-02-12T22:25:00.000-05:00

Eden attended a ribbon cutting ceremony for the Blue Jackets Family Room at Children's Hospital this evening. She got to visit and get autographs with the following players: Adam Foote, Rick Nash, Dan Fritsche, Manny Malhotra, Jody Shelley, Pascal Leclaire and of course Stinger. Eden also managed to Autograph her own business cards for a couple of the guys as well. Leave it to Eden.